Tuesday, August 16, 2011

Grandma has given me an assignment to get pictures of each of my children so she can put them on her wall or shelf or wherever it is she keeps pictures of her grandkids.
Perhaps she doesn't understand what she is asking!

Deep Thoughts with David:

Not Very Deep Thoughts with Seth:

Joe had a thought once:

Oh, where is the picture of Katie, you ask?
After all this, wouldn't you have just given up too?

And not the kind you have out on your front porch either! I keep these in the basement.
Joe finally saved up enough to get his bass. He's learning little bits at a time. Now they are both learning how to stay with someone else playing! lol

The balloon fairy attacked.
We were not sure how to get candles into Katie's giant no-bake cookie cake. Joe decided the best solution would be to light the thing up with his giant Roman candle.
Fortunately Dad has a little more maturity and found a more conservative way to handle it. (why is there a bottle of Tobasco sauce sitting there?)

O.k., so, after the insanely long post of David's experience with his less-than-wonderful new friend, it's time for some pics of the FUN.

What is the first thing smart people do right after surgery? TWINKIES!!!!!!!!

Getting in line with the latest big-cinema movie trends, this Summer we decided to present Carl in 3D. Get your glasses at the concession stands now!
(It's lovely being trapped in a family of idiots.)

At St. Louis Children's Hospital even the salads are happy!

Did we mention room service?

And
You know it's time to go when Dad starts getting stir crazy!

After busting out of the hospital and finding a safe haven at the hotel room with his brothers and sister, David returned back to "normal" (translation: being a mindless zombie in front of the brain-sucking Playstation.)

Monday, August 15, 2011

Well I guess it's about time I wrote about our Summer adventures from this year.

We had many plans and dreams for our Summer vacation of 2011. Those lovely, hazy, lazy days of Summer.
Joe and I were going to become the all-time zombie masters Of The Earth, David was going to build a space shuttle out of household appliances, Seth was going on his first world tour of rock star awesomeness, and Katie..... and then there's Katie. It's better if we just leave Katie alone and allow her on her merry way.
The last-day-of-school Friday came and my children happily launched out of the school doors and ran screaming... I mean, walked quietly and orderly to the car.
Away we drove, the horrible bondage of daily school routine just a distant memory in the rearview mirror. The dreams of laziness, slovenliness, pajamas-all-day-iness, and video-game-athons blossomed and the scent was intoxicating.
Fast forward to Sunday. Nice, normal Sunday. Everything was, well, normal. We went to church. We came home from church. I smacked Joe a few times. Kicked Seth. Chased David around the yard. Hid from Katie. All nice and normal.
That evening storm clouds began to gather.
David began to feel a little "not so good."
The clouds intensified and the winds picked up.
David's cheeks became red and his eyes glazey.
A storm warning was issued and a tornado was bearing down on Joplin, a town South of us.
David began to run a fever.
We were counting ourselves lucky we were North of the storm and would be clear of its destruction. Little did we realize the "tornado" that was about to hit our lives.
When David woke up on Monday morning he had a large swollen lymph node on the side of his neck. David often gets swollen lymph nodes through the Winter when he picks up little viruses and colds. His body works hard to fight off infections. He is often one of the first kids in our family to clear a virus even though he takes medication which suppresses his immune system.
During the past Winter none of the kids had been sick and I had just started patting myself on the back, mommy pride, that I'd gotten my kids through the season healthy and well. We were past virus season now, we were home free!
David ran a fever and the lymph node continued to get bigger. By Tuesday it was time to go to the doctor. I made an appointment with the local doc and before we left the house I picked up the phone to check with David's transplant nurse, making sure I had all the bases covered, what medications we would not accept (interactions ya know) and any questions or suggestions on what to look for. It seemed rather odd to me that the lymph node on just one side was swelling--usually with a sore throat the lymph nodes would swell on both sides. The transplant nurse did bring up the threat of PTLD.
PTLD (Posttransplant Lymphoproliferative Disorders) is a disease transplant peoples are at risk for. It was something we worried about with David after his second transplant.
Here's how it works: By the time we are grown up, almost all of us have had exposure to the Epstein-Barr Virus. However, a lot of very young children have not been exposed yet and therefore have not developed antibodies to the virus. When you transplant a child with a portion of an adult (likely has had EBV so the virus is still in their tissues) liver then EBV gets into the kiddo's system. In a child with antibodies to EBV they can usually fight the virus and keep it knocked down. However, if the child does not have antibodies on board and then you suppress the function of the immune cells there's nothing to "police" the virus from the new liver and it takes off in a wonderful riot, looting and pillaging and making a mess of things. Over time it is possible for the EBV to cause PTLD. It usually happens within a couple of years post-transplant. We were very worried at the time for David that he could develop this malignancy on top of everything else. The doctors gave him medications to combat the EBV and we were very fortunate to make it through without PTLD.
*Whew!*
O.k., so, the transplant nurse brought up the possibility of PTLD but I brushed it aside, confident it wouldn't be that in this kid--he is over 11 year posttransplant. No worries.
Off to the doctor we go. Poor doctor. He is such a nice man.
He looks at David, notes the impressive size of the node--just on one side!--and expressed that he would like to do a little research. Perhaps we could give David a little amoxicillin, that shouldn't hurt anything, and he'd look into possibilities some more. I told him the transplant nurse had mentioned PTLD. He wasn't sure what that was (we are very far from any transplant center way out here in the boonies). Finally the doctor's staff called the transplant nurse and she talked to the doctor, giving the information he needed to order a bunch of labs on David.
The labs Jason and I were most interested in was the EBV titers and PCR. That would give us a good idea if this could be PTLD (not something we wanted to think about). If the EBV had indeed activated again we could be in some real trouble. (Didn't want to think about it!)
That afternoon the local doctor called. He had called a few other doctors in our area and consulted with them. They had come to a consensus that it would be best for us to work with David's transplant doctors since none of them really knew anything about PTLD and were basically afraid to touch David because of his transplant status. He also mentioned that the other doctors advised it would be best to withhold antibiotics until more progress was made in diagnosis so as to not make the picture more "murky".
*Punt!*
Didn't know we were a football. Cool!
Honestly, I prefer a doctor to be hands off when he doesn't know what to do rather than start "trying" things. Experimentation is not something I favor when it comes to my kiddos' lives.
So I guess we wait a bit.
Some labs are back.
White Blood Cell count is goofey.
Really? The child has an infection, off course it's goofey!
We wait a day or two more. The node continues to grow. What was once a hard knot under his chin has now come around to behind his ear and is stretching toward his collar bone. He has fever, feels crappy, no appetite and the node is very painful.
This really isn't the way I planned on becoming all-time zombie master Of The Earth. Although Joe is convinced that it is looking more and more like a zombie chomped David and we should quarantine him.
David has decided that his new "friend" has grown big enough that he should have his own name. David decided that name would be Carl. So from then on you had to address David AND Carl--it is very rude to talk about Carl like he's not even in the room.
Well, since the doctors weren't going to do anything for David at this time it was my turn.
O.k., actually I'd already been doing lots of mullein and lobelia oil and stuff like that but now it was time to kick it up a notch.
I began mincing up cloves of garlic, loading it into capsules and stuffing them down him.
Next was parsley.
I was braced for a fight--David usually gives me all kinds of grief just getting him to eat some salad--but he was very willingly and obediently chewed away.
Wow! That showed just how desperate this child was to feel better. Incredibly scary!
Tons of water and lemon juice. He drank lemon juice with no complaints.
This child was REALLY sick.
For snacks he asked for carrot sticks and cantaloupe chunks.
Joe put forth the theory that Carl had sucked out David's brain, hence the huge change in tastes. I was beginning to concur.
Jason spoke with the transplant nurse. She was very concerned we could be seeing a case of PTLD. Although unlikely, it is possible to develop PTLD this far out from transplant. (Still really don't want to think about it!) She told us David needed to have a PET scan. She wanted us to head for Pittsburg immediately but it isn't just a little trip down the lane for us. We wanted to do as much of the testing as we could do here first.
The local nurse was a sweetheart about helping us get it set up but there weren't any appointments avaliable soon enough. The transplant nurse told Jason that PTLD can get really bad really fast. (O.k., not thinking about it but going into panic mode now!!!)
The local nurse started working with the hospitals down in Springfield. She begged and pleaded on our behalf and finally got someone to give in and get us on the schedule two days later. We love nurse Lori, she is AWESOME!
In the mean time poor David was suffering with Carl. Carl had decided he wanted to be red and the redness ran down David's neck and onto his chest covering the area that would be exposed if David were wearing a V-neck t-shirt. Nice huge angry bump. And you thought your acne was bad!
We asked Jason's mom to come take a look at David. She has been a nurse for 50+ years. She took one look and announced that it was an infection. She said it was classic for infection.
Wow did we feel better.
Amazingly better.
Someone finally pulled that monster elephant off our shoulders.
It's not PTLD, just a huge horrible life-threatening infection. Whew!
Yeah, how crazy was that, but that's how we felt!
We took David down for his PET scan.
Honestly, I really don't understand what all the fuss and cost is about. The day before this test I had walked David outside. He was missing his Rampage and wanted to visit him. The horse ran right up the fence when he saw his boy. As David stood at the fence, Rampage leaned down, looked at him for a moment, sniffed him a bit and nuzzled his shoulder. Rampage seemed to sense something was wrong and wrapped David in one of his "horse hugs" and just stood with him.
That was a pet scan and it cost us nothing.
But I guess that isn't good enough for the medical profession.
David had his PET scan. We called the transplant nurse to let her know they were sending the discs overnight but she was calling the radiologist to get his report that day. Cool!
I talked with the transplant doctor, told him that Jason's mom said it looked classic for infection and could we please now get David on some antibiotics. He had his nurse call the pharmacy and we had David on cipro within the hour.
Things started looking better by the next day. David was feeling better. Carl was starting to ease up a bit--the redness was starting to pull-in and focalize. Everything looked like we were headed in the right direction and the antibiotics were working. The report from the PET scan showed metabolic process at the node in the neck but not in other places of the body. If it was PTLD it would be likely there would be malignancies in other nodes through the body. We were very glad to hear things looked clear. That was a GOOD sign.
It is a hard thing to think that your child could have cancer. Of sorts. Something like cancer but doesn't usually even respond to chemo. And to read that in some cases a mortality rate as high as 100% has been quoted.
Ugh.
We were finally starting to breathe a sigh of relief.
Apparently Carl doesn't like sighs of relief.
After a couple of days of things going in the right direction, things turned around and started going downhill quickly. At the same time the transplant nurse called and told us that David's labs came back positive for EBV. What a punch in the gut. I can't even explain the sick feeling that came over us. Just when we thought we were out of the woods the worst news we could get landed on our heads.
We looked all around Springfield for an oncology or ID doctor to see David but no one would take him because of his transplant status and possibility of PTLD.
I did not have a copy of the labs myself but if I had, I would have seen that the nurse had read them wrong. It showed that he had HAD an EBV infection sometime in his life (duh!), that part was positive, but the part showing whether or not he had an active infection was negative. Grrrrr.
We finally went with the doctors at St. Louis Children's Hospital. David's transplant doctor recommended them to us. We had a little trouble getting David's appointment as soon as we wanted and thought about possibly taking him to the ER. David's transplant doctor sent some e-mails to help us. We decided to go on out to St. Louis so we would be there close to the ER if we needed it while we waited for David's appointment.
We had to leave our other children with their grandparents. It has always been such a hard thing to leave my other kids when I have to go to hospital with David. Talk about being torn in half!
On the way out of town I had picked up copies of David's labs to take with us. That night I opened the labs to have a look for myself and discovered the mistake the transplant nurse had made. What a relief!!! What a roller-coaster!
Carl was cooperative and let us get through the night and make it until the appointment.
We met the most awesome peds ID doctor at this hospital. She was kind and good and so gracious. She and the lead hepatologist who works with the transplant team took one look at David and said "that is NOT PTLD."
How do you keep from dropping to your knees at a time like that?! I mean, I don't want the doctors to think I'm insane or something but how do you stay in your chair when someone tells you that your very worst fears you have been living with are now over? Wow.
We had a lot of Wows this Summer.
The ID doctor started grilling us on everything trying to figure out what David might have been exposed to so we would have some idea what to start treating for. We dug through all memories, trying to remember every little thing, every bug bite, every person he was in contact with, anyone who might have breathed on him or even looked funny at him. We thought of all kinds of strange and exotic bugs that could be infecting this kid.
The ID doctor set up a consult with the ENT team--they would be opening Carl up to drain him and clean him out. We went to the ENT clinic and met Dr. Spaz. The guy was awesome! Total spaz. He took one look and was very impressed. All the residents kept snapping pics when they got the chance. David was feeling like a celebrity but we had to inform him it was really Carl everyone was looking at. Humility stings sometimes.
Here, you can decide for yourselves which one is better looking:
Back in David's room a little while later the IV team came in to get things started so David could go to surgery. Apparently Carl decided he'd had enough. He didn't wait for the ENT team to have all the fun--he burst open on his own and the IV nurses got to have some fun too!
As you can imagine, they were thrilled. No, actually, they were. Nurses are disturbing people sometimes. And, after surgery, the ENT doctor informed me that we were NOT getting a discount.
Carl had tunneled in to David's neck a good two inches. The opening in David's neck was only about as big around as a pointer finger but by the looks of things (we got to see the cool surgery pics) the skin around the opening was failing and would eventually give way.
David went to his room, got hooked-up on IV antibiotics and the party began. He had his own personal little TV, for food service they gave David a menu and he got to call "room service" and order whatever meals and snacks he wanted. Baaboo and Poppy brought the other kids up for a visit and, being the good brothers they are, Seth and Joe smuggled a bag in with a little TV and a Playstation for David to have in his room.
David was feeling better each day. He wasn't too happy about the idea of the "unpacking" of his wound but he found out the doctors have really cool drugs that make everything all better.
Cultures showed that the exotic crazy bug we were dealing with was Group A Strep.
Bor-ing!
Doesn't make for a very good story so we decided it needed to be Garbuly-glunk-muck-muck spado.
Cool, huh?
Anyways.
So you know what they put him on?
Amoxacillin!
Yep!
Remember waaaaaaaaay back at the beginning when I had David in to the local doctor's office and he thought we could put David on a little amoxacillin? Another one for the book of FOLLOW YOUR GUT INSTINCTS!
The ID doctor told us it was interesting, thought, they couldn't figure out why David had gotten better for a few days when he was started on the cipro. Strep does not usually respond to Cipro. They were very puzzled by that.
A couple of days after talking with the doctors I saw a paper published in the Journal of Microbiology with findings of a study on group a strep showing susceptibility to garlic.
Ha!
Only thing was, when David started the Cipro, I quit giving him the garlic because I figured the antibiotic would take care of things. So we had the backlash.
So that was two strikes.
Poor kid, glad we didn't make it a third.
David spent a week in the hospital. He went back to surgery a second time to irrigate the wound and put more packing in. More pretty pictures. It's kinda cool to see your kid's trachea from that angle.
David did discover that there was a TV and a Playstation in the little pre-op room he was in. Ever play Playstation when you're high on midazolam?
Don't answer that.
Children's Hospital St. Louis was AWESOME! Everyone we met there could not have been sweeter to us. Everyone from the top doctors down to our little housekeeping lady were as kind and sweet as they could be. The waiting room for surgery has all these little private cubicals (or even private rooms) that can be reserved so you can sit with some privacy.
They have lots of things going on for the kids. There were therapy dogs coming along to visit the kids; there was a library to check out books and videos; a family room for other siblings to stay with a staff to watch them and keep them busy while parents were busy tending the sick child; a "teen" room with video games, music and places to hang out and talk with other teens; a garden up on a roof level which was a nice escape from the hospital environment; a nice cafeteria with Pizza Hut and Dairy Queen; and did I mention room service? The theme of the room service is forestry and Moose. Mini Moose sliders, moose pizza, etc. When the food gets to your room, the person delivering it is dressed in a forest ranger uniform. How cool is that?!
The rooms have a shower and a little bath tub in each bathroom so the kids can get cleaned up in comfort and privacy. It seems like everything has been thought of in this facility to preserve as much comfort and dignity for their patients as they can. St. Louis Children's Hospital rocks! I'm ready to rip David's arm off just so we can go back and stay a while longer!
So after a week we finally got the o.k. to take David home.
We were all packed up, David dressed, just waiting for the doctors to finalize the papers when the nurse came in to tell us that the lab just called and one of the cultures had just grown out another bacteria.
Wow.
Yep, another one! Another wow I mean. But, yeah, another bacteria too.
I guess that's what we get for renaming Mr. Boring Old Strep. We were actually going to GET Garbuly-glunk-muck-muck spado.
Huh.
When am I ever going to get my chance to be all-time zombie master Of The Earth?!!!!!!!
The little peds fellow came skittering into the room. Really cool kid. (Yeah, I found myself referring to residents as "kids". Age, thou art the devil!!!!) All kinds of crazy fuzzy hair sticking up out of his head. He came in to inform us that the ID doctors had all shot down to the lab upon hearing the information about David's culture, took a look for themselves and declared the new bacteria to be a contaminant.
Whew! No Garbuly-glunk-muck-muck spado. Not really.
Although we're still going to tell everyone that's what it was anyways.
So David was given his walking papers and we walked outside and smelled the beautiful smell of freedom. And some smog and dust, a little tar from the roadwork going on down the way, roasting hot dogs from the vendor over there and BBQ. I definitely smelled some BBQ.
Once home we got to do wet to dry packing on David. Ah, a walk down memory lane. And slowly, but surely, Carl came to an end.
During this experience David endured many lectures by his concerned mother about the types of friends he was chosing and the consequences for not being more careful and thinking things through a little better before picking up certain types of friends. I am happy to report that David has been much more careful now and has now, to this date, been a healthy and happy child.

Jason and I took the two older boys to an activity in Springfield on Saturday. We had the chance to do some running around and have a "date" while waiting on the kids.
After some errands and shopping we decided to hit one of our fave places for sushi--Jason gets tired of listening to me when I am craving Cali rolls.
We made our selections and decided to try the "dragon roll." When you have a chance to eat bbq eel you dive on it, right?!
The presentation of the dish was so fun that I had to take a pic when it got to our table...
Who knew it would be an actual dragon! And they set the sauce on fire too. I always love it when things on our table are set ablaze. :)

Howdy Neighbor

I'm a California Native transplanted to the Missouri Ozarks.
I've learned how to chase cows in high heels and load hay faster than you can say "Coco Chanel."
These are some of our pictures and stories of living in a land with breath-taking beauty and adventure around every bend.